Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

When To Expect What


Em314

Recommended Posts

Em314 Explorer

Only about a week and a half in with going gluten-free. Still having some stomach upset; I feel like it's already a little bit better but I may be imagining it. GI symptoms (including/especially pain) have been one of my primary issues.

Anyway, my question is at what point should I switch from being patient to starting to suspect there's still gluten in my diet somewhere? I understand healing takes a long time but also don't want to ignore a problem if there is one.

Seems like some people have dramatic results almost instantly, but I'm not sure if that's the norm. Seems a little unrealistic for that to happen for me because there is definitely damage to my intestines (biopsy confirms this), which my doc thinks will take at least half a year to fully heal.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



love2travel Mentor

My doctor told me it would take up to two YEARS for full healing. That was 1.5 years ago (time has flown!). After eating gluten I never did feel sick at all. I am not about to cheat now to see what happens, that is for certain. Many people, upon accidental glutening, feel worse than they did before. It seems with many that the longer one is gluten free the worse the reactions become. Each person heals at a different rate. Some do feel far better very quickly; some take ages so it varies widely. Hopefully you are not imagining feeling better! It is possible that you really are. Sure, healing can be slow, but many symptoms can improve quickly. Hope that is the case with you! :)

Em314 Explorer

Thanks love2travel. That's about what I thought, and I do think I am already noticing a little difference, anyway. I have not (knock wood) yet had really extreme pain since going gluten-free, and prior it was happening at least once a week. So even if that's the only major difference for awhile, that would still be a pretty big deal for me. :)

1desperateladysaved Proficient

I am 6 months gluten free. I felt immedietly better upon going gluten free. Then I began suffering incidents of cross contamination, mistakes and possibly withdrawl symptoms. I discovered other food intolerances and nutrient absorption problems. I haven't had just a picnic, but my highs seem higher. One doesn't always have a smooth course of a hill, but if you stay headed in the right direction, you should go up.

Get well, stay well, as soon as you can.*** If you it any snags, just ask.

Diana

nvsmom Community Regular

I found my reaction to lactose became more obvious after going gluten-free. It caused me the same sort of pain... could it be another food sensitivity like milk causing the problem?

Good luck! I hope you feel better soon.

DavinaRN Explorer

I'm eight weeks gluten free, except for accidents, the change I noticed immediately was I was no longer sicker after eating than before I ate. Looking back over the eight weeks, I see less body aches and headaches, more regular bowel patterns, a little more energy. Hoping that energy level continues to improve :)

GFreeMO Proficient

Em314 - I have been gluten free for about the same time as you and am feeling the same way. I think that it's just going to take us several months to feel better. I could have written any of the above responses myself.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

1.5ish years later and i'm healthy as a horse when i don't catch a cold :)

Em314 Explorer

Thanks guys.

I think I'm noticing some little improvements here and there- energy, pain, bloating- but there's a ton of room for improvement. I strongly suspect stress and acidic food are keeping these "symptoms" more present than they'd be otherwise. (I can fix the acid issue/WIP; stress I do the best I can to minimize but have a bit less control over; I suspect it will be reduced when the holidays are over with.)

One thing I can't seem to easily find (and I have looked) is info on which of the celiac symptoms are caused by gluten (in which case, I'd expect an immediate improvement), vs. which are caused by having a damaged digestive system (in which case, I'd expect a more gradual improvement over time). I know everyone's body is different and even having that knowledge won't tell me how I'm going to feel on what timeline, but I would like to know what info is out there. I may start a thread about it if nobody replies in this one. EDIT: I went ahead and made a separate thread for this question.

  • 3 weeks later...
Em314 Explorer

One month later- energy overall better, head clearer, but stomach issues are... improving, but still there. I'm as sure as it's possible to be that it's not gluten... I think I'm in that fun phase where I find out what my stomach is sensitive to other than gluten. And I'm pretty sure some of it is that I did come back as having intenstinal damage, but I'm not sure how much. It's frustrating.

  • 2 months later...
Em314 Explorer

Frustrated again.  I had whole week straight pain-free in early feb.  A little pain popped up, then over a month almost entirely pain-free.  Thought I was in the clear.

 

This entire week:  Increasing pain, especially later in the day, worse as the week as progressed.  And bloating.  Also, headaches, which I've never been prone to.  Pain is in my stomach and creeping up my damn throat right now.

 

Not only are there no sources of potential gluten I can think of, there's also nothing NEW in my diet, to boot (I've tried thinking of anything and everything- nothing's changed this week, or immediately before it- I keep a food diary, I would know- only things that flux are timing and quantity).  I am eating the same stuff I was eating when I had that good long chunk of not-pain.

 

Other possible culprits:  Stress (which has indeed increased), increasing sensitivity to sweeteners as my insides heal up, earting too close to sleep.  Dehydration?  God, I don't know.  I am back in that frantic place of not knowing and desperately needing to.

 

I had ongoing issues with energy up and down; my guess continues to be low blood sugar, for that.  Has some slight issues with nausea, before this week- very mild, just someties would feel sort of queasy.

 

WHAT THE FRICK??????  I thought I was DONE with this.  =(

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,007
    • Most Online (within 30 mins)
      7,748

    mlaabs
    Newest Member
    mlaabs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.